Friday, September 26, 2014


My support group running in the color run. Love each and every one of this ladies.

Maryland was short lived for us. We got there late Monday night and spend all day at NIH on Tuesday. We met some incredible people and doctors there. Everyone was very pleasant and helpful. The only downfall was the waiting. My appointment was scheduled for 12:45, we didn't actually go back and see the fellow until 2:00. After she talked to us and did an exam she went into a meeting with the doctors to discuss my situation. The team didn't come back into our room until 4:30. At this point I thought we would be spending another night in MD because our flight was scheduled for 7:50 and the airport was at least an hour away and it was rush hour. We didn't leave the hospital until after 5 and had to go back to the hotel. We got a taxi from the hotel to the airport but he didn't get there until at least 5:45. But the good news is that we made the flight with about 20 extra minutes to spare.
Kyle was pretty excited that we got to watch baseball on the flight home.

The trial I will be participating in involves me just taking a pill called Cabozantinib every night. I have to to NIH every two weeks for the first 4 months for a check up. After 4 months if everything looks good then I will get to go back up there every month. I will get scans every 2 months up there. This pill has shown improvement in patients with spots in their lungs but they don't have a lot of information with patients that have spots in the liver. So hopefully I can be the one that it shows improvement in both the liver and lungs.

Once again the doctors had to inform me that my case is very rare. So I am hoping I can help them learn more about it and they will know how to treat people in the future that may have this same rare form of cancer.

I am excited to get started. I was relieved I didn't have to spend a long period of time up there and that I can do this all at home. I will just become more of a frequent flyer and will get to know Maryland like we did Houston. NIH will help with all travel arrangements and they were actually going to see if I qualified to stay in the Children's Hotel while I was there but they thought the age cut off was 26.

Right now we are planning on going back the week of Oct 6 to get scans and then see the team on Oct 7 and will get started after that.

Thank you everyone for the thoughts a prayers. My family and I really appreciate it.

National Gymnatics Day was Sept 20th so I had to do my yearly handstand. If only took about 10 tries to actually get a picture with me all the way up in a handstand

Monday, September 22, 2014


Here in just a few hours Kyle and I will be on a plane to Maryland.  We will be meeting the doctors tomorrow at NIH to learn about a trial they have for me. I'm excited to go but nervous because I don't know what to expect. I don't know how long I'll have to be away from home so that part is kind of stressing me out. I like to have a plan but right now we are just going with the flow.

As soon as we learn more I will update everyone.


Thursday, September 4, 2014

Hard to digest

I am still trying to digest the news I got while we were in Houston last week. On a good note, radiation is working and the spots in the brain are getting smaller if not gone. So that was nice news to get right away. But the excitement from that wore off quickly after we saw the oncologist. My CT scans showed increase in size in the tumors that are in the liver and lungs. So that means the 4 rounds of chemo I did didn't work. We believe they are now resistant to chemo so that means we will need to find something else that will hopefully work. My oncologist down there gave me three options; 1)we could try another chemo regimen (not  an option for me since I have done 4 different ones and its not working any more) 2) get on a trial (we believe this is the best option) 3) do nothing at all and just make me comfortable (I am not to this point and I am not ready to just throw in the towel).

I don't want to do chemo again because I feel like its just breaking own my body and making it really hard for it to fight off anything.

We are currently looking for trials at NIT in Maryland. A wonderful lady named Aricca has success finding herself a trial so I am going to hopefully follow in her foot steps.

The last couple of weeks have been really hard. I have no energy, my blood pressure is extremely low so every time I stand or do any type of movement I get light headed and short of breath. So I have had to stay close to the ground so if I do pass out I don't have very far to fall. Things are getting better but I am ready to be back to some sort of normal state. I just want to not be tired and have the energy to clean my house. I have been at work but I haven't been able to be the best coach I can be because I have to sit a lot. I haven't been able to be the best gym owner either because I can't spend the time I need to to make sure everything runs smoothly. I haven't been able to make it through a weekend of racing without spending a full day in the motor home sleeping. My family does so much to get my race car to the track and I haven't even been able to race. I know I won't feel normal as long as I have this disease inside me but I just want the energy to do my everyday task. And not let anyone down because I can't do what I need to get done.

So right now we are just going day to day. I don't think I am allowing myself to believe we are running out of options. Every time I have done chemo it has worked, even if it was for just a very short time, it should it was doing its job. And now I have nothing to show for the 4 rounds of chemo I went through this time.

Hopefully we will hear back from NIT with an option. And we can get started on that ASAP so I can get back to "normal" whatever that is.